a culturally-based palliative care tele-consult program for rural southern elders

Conditions: Cancer; Cardiac Disease; Pulmonary Disease; Neuro-Degenerative Disease; Renal Disease; Stroke; Sepsis; Hepatic Disease

Summary: rural patients with life-limiting illness are at very high risk of not receiving appropriate care due to a lack of health professionals, long distances to treatment centers, and limited palliative care (pc) clinical expertise. secondly, although culture strongly influences people's response to diagnosis, illness and treatment preferences, culturally-based care models are not currently available for most seriously-ill rural patients and their family caregivers. lack of sensitivity to cultural differences may compromise pc for minority patients. the purpose of this study is to compare a culturally-based tele-consult program to usual hospital care to determine whether a culturally-based pc tele-consult program leads to lower symptom burden in hospitalized african american and white older adults with a life-limiting illness.

the triple threat of rural geography, racial inequities, and older age hinders access to high quality pc for a significant proportion of americans. rural patients with life-limiting illness are at very high risk of not receiving appropriate care due to a lack of health professionals, long distances to treatment centers, and limited pc clinical expertise. although culture strongly influences people's response to diagnosis, illness and treatment preferences, culturally-based care models are not currently available for most seriously-ill rural patients and their family caregivers. lack of sensitivity to cultural differences may compromise pc for minority patients. the two major public health consequences of these problems are: 1. access-rural patients have sub-optimal or no access to pc. despite significant nationwide growth, access to pc is grossly inadequate for the 60 million us citizens who live in rural or non-metropolitan areas. there is low pc use in rural and minority populations. as a result, rural patients experience significant suffering from uncontrolled symptoms that pc expertise could alleviate. 2. acceptability-even when palliative and hospice services are available, african americans (aa), compared to whites (w) are more likely to receive medically-ineffective, poor quality care due to a culturally-insensitive health care system and mistrust of health care providers. making culturally competent pc available for diverse underserved and rural americans is a national priority. this community-developed, culturally based teleconsult intervention specifically targets the gaps of pc access and acceptability. it was developed by and for rural, deep south aa and w patients and providers, and uses state-of-the-art telehealth methods, to provide pc consultation to hospitalized seriously-ill patients and family. using national consensus project guidelines, and the culturally-based, community-developed pc tele-consult intervention, a remote pc expert conducts a comprehensive pc patient assessment, in collaboration with local providers. following interdisciplinary pc team review, the remote clinician communicates recommendations. two additional structured follow up contacts at day 3 and 6 ensure care coordination and smooth transitions that enable patients to receive guideline concurrent pc in their communities. aims of the study and hypotheses: primary aim: determine whether a culturally-based pc tele-consult program leads to lower symptom burden in hospitalized aa and w older adults with a life-limiting illness. hypothesis 1: intervention patient participants receiving a culturally-based pc tele-consult program will experience lower symptom burden on day 7 post-consultation. secondary aim: determine whether a culturally-based pc tele-consult program results in higher patient and caregiver quality of life, care satisfaction, and lower caregiver burden at day 7 post-consultation, and lower resource use (hospital readmission, emergency visits) 30-days post-discharge. hypothesis 2: intervention participants and their caregivers receiving a culturally-based pc tele-consult program will experience higher patient and caregiver quality of life, care satisfaction, lower caregiver burden at day 7 post consultation, and lower resource use (e.g. hospital admission, emergency visits) at 30 days after discharge. exploratory aim: explore mediators and moderators of patient symptom and caregiver burden outcomes.

Eligibility criteria:
inclusion criteria: * aa or w; * 55 years old; has a condition which fits into one of 3 illness paradigms -cancer, chronic progressive, frailty. * clinician answers "no" to question: "would you be surprised if this person died in the next 12 months?" * patient has a caregiver who has been involved in their care. * able to complete baseline interviews exclusion criteria: * unable to complete baseline interviews; * currently receiving hospice care; * no family member/caregiver.